Good doctors for ATN in Toronto?

Does anyone know of a good neurologist or even GP for ATN in Toronto/GTA? I'd go out of town too if necessary.

I've been suffering from severe bilateral ATN for few years now, and the pain is now at a steady 10/10. Unfortunately, my neurologist doesn't seem to know anything about ATN and takes months to book, and my GP isn't comfortable prescribing pain medications (which he knows little about). Medications like carbamazepine or gabapentin didnt help at all, only lorazepam, painkillers, cymbalta and bottox injections into the masseter have provided any substantial relief.

Despite all that I'm essentially crippled by pain 24/7, and desperate to find a doctor who can help me

Any advice is highly appreciated. Thank you.

Hi Bandalar,

I’m in Alberta, I know that one of our members Brian

http://www.livingwithtn.org/profile/BrianDevine

Is from Guelph and recently had his second mvd surgery with

Dr. Michael Tymianski (Toronto’s Western Hospital).

Maybe you could contact that hospital for a referral to a neurologist with experience with TN or send Brian a message.

You can also check out our recommend a doctor page to see if there are any listed there in your area.

Pain wise, have you tried a lidocaine mixed cream to help take the edge off in the meantime?

It helped me. I bought one called Emla at a shoppers drug mart.

Hope this helps, Mimi

HI Balandar,

The Trigeminal Neuralgia Association of Canada www.TNAC.org Has recently completed 3 webinars with Doctors from Canada. The most recent one was by a Dr Hodaie in Toronto. To view the recordings of the webinars one has to be a member of TNAC. The cost is only $25 and there is a lot of valuable info and quarterly newsletters as well as these webinars included in the membership. You also get a tax receipt for charitable donation because they are a registered charity. In fact they are using the membership dollars to help fund some of Dr. Hodaie's work. The TNAC wrote the following about her

"

Dr. Hodaie completed her Neurosurgery residency and fellowship in Stereotactic and Functional Neurosurgery at the University of Toronto. Her field of clinical expertise and research interest include neuromodulation for the treatment of movement disorders and pain, surgical treatment of trigeminal neuralgia and Gamma Knife radiosurgery. She is currently an Associate Professor of Surgery and the surgical co-director of the Joey and Toby Tanenbaum Gamma Knife Radiosurgery unit at the Toronto Western Hospital. Dr. Hodaie is also affiliated with the Institute of Medical Science, Faculty of Medicine, as an associate member. She has an active research lab focusing on the role of structural MRI techniques such as cortical thickness analysis and diffusion tensor imaging/tractography. Current lab projects explore methods in which these imaging techniques can pinpoint key neuroanatomical signatures in different pain syndromes, and their utility as imaging adjuncts in surgical diagnosis and tre atment. Dr. Hodaie also has a strong interest in international neuroscience and neurosurgical education. She has pioneered and enlisted international collaboration in the application of new educational tools in the field of neurosurgical education in the developing world, focusing on structured online course modules in neurosurgery"

Her phone number is 416-■■■■■■■■

The other Doctors included in the Webinar are:

Dr. Anthony Kaufmann, MD, BSc (Med), MSc, FRCP

Associate Professor, Section of Neurosurgery, University of Manitoba

Director, Centre for Cranial Nerve Disorders

Co-Director, Centre for Cerebrovascular Disease

Co-Director, Winnipeg Centre for Gamma Knife Surgery

Supervisor, Intra Operative Monitoring Program

Dr. Anthony Kaufmann & the Centre For Cranial Nerve Disorders:

www.umanitoba.ca/cranial_nerves/ccndhome.htm

■■■■■■■■■■■■■■■■■■■ 204-■■■■■■■■

Dr. Christopher Honey is Associate Professor of Neurosurgery at the University of British Columbia and Director of Research for the Division of Neurosurgery. He was the President of the Canadian Section of Stereotactic & Functional Neurosurgery for its first seven years. He is on the Board of the World Society of Stereotactic & Functional Neurosurgery and was on the Board of the American Society of Stereotactic & Functional Neurosurgery.

Dr. Christopher Honey, Stereotatctic and Functional Neurosurgery at the University of British Columbia:

www.drhoney.org/

I am co-chair of the Trigeminal Neuralgia Support Group of London. TNsupportlondon.ca

We have a member who had the MVD in Toronto a few months ago. I will try and secure the name and contact info for you.

In London most of our members have been to see Dr. Michel Parent (not sure of spelling.) I will get his number for you too.

I hope this helps a bit. Take a look at the TNAC website www.tnac.org as there are good links and a lot of good info.

Liz

1 Like

Hi Elizabeth,

Thank you so much for your help! I will definitely signup to TNAC. I'm on a waiting list for a consultation with Dr. Hodaie, so it would be very interesting to see her Webinar and learn more about what she might be able to do to help me.

That being said, the waiting list is really long, so I'm hoping to fund a good neurosurgeon who can get me in a lot sooner.

Thanks again for your help!

Hi everyone,

I am looking for the same thing-a specialist in Toronto. I have a referral for a neurologist but have to wait for six months! I have been doing a bit of research and I am not sure who to see. I keep seeing Dr. Michael Tymianski's name come up and am wondering if I should try to see him?

Hi Bandalar
I was curious if you ever did see dr Hodaie. I have been waiting for an appointment since November 2014. How long did you have to wait? What were your impressions? I have TN2 so I am unsure if I am a candidate for any procedures. I am having a difficult time with the side effects of my medications ( tegretol and baclofen and now low thyroid meds). Just when I get a few weeks of controlled pain bang it breaks thru again and I need to increase my dose. I am also anxious as to what to expect since my first neurologist appointment did not go as I expected and left quite upset. He is a old school doctor who is reluctant to try different newer meds and frequently jokes about his impending retirement… Lol br/>


Bandalar said:

Hi Elizabeth,

Thank you so much for your help! I will definitely signup to TNAC. I’m on a waiting list for a consultation with Dr. Hodaie, so it would be very interesting to see her Webinar and learn more about what she might be able to do to help me.

That being said, the waiting list is really long, so I’m hoping to fund a good neurosurgeon who can get me in a lot sooner.

Thanks again for your help!

Did you see Dr. Hodai? I have heard mixed things about her. I saw Dr. Tymanski at the same hospital. I have ATN and he didn't offer me any help. He did refer me to an amazing neurologist in Etobicoke, Dr Watson. He is semi-retired so I am not sure if he is accepting patients.

Dizzyowl said:

Hi Bandalar
I was curious if you ever did see dr Hodaie. I have been waiting for an appointment since November 2014. How long did you have to wait? What were your impressions? I have TN2 so I am unsure if I am a candidate for any procedures. I am having a difficult time with the side effects of my medications ( tegretol and baclofen and now low thyroid meds). Just when I get a few weeks of controlled pain bang it breaks thru again and I need to increase my dose. I am also anxious as to what to expect since my first neurologist appointment did not go as I expected and left quite upset. He is a old school doctor who is reluctant to try different newer meds and frequently jokes about his impending retirement... Lol br/>

Bandalar said:

Hi Elizabeth,

Thank you so much for your help! I will definitely signup to TNAC. I'm on a waiting list for a consultation with Dr. Hodaie, so it would be very interesting to see her Webinar and learn more about what she might be able to do to help me.

That being said, the waiting list is really long, so I'm hoping to fund a good neurosurgeon who can get me in a lot sooner.

Thanks again for your help!

If you need a neurosurgeon, Dr. Mike Tymianski at Toronto Western Hospital is excellent.

Did anyone get any help in the Toronto area for treating ATN?
I have heard of Dr.Watson.
Wish he was still seeing people.

1 Like

I’m just tagging myself onto this thread after ellen5 posted the question, just hoping to find out about any good neurologists in Toronto.

It’s been seven years, but I figured this could help someone else. Yes, I did see Dr. Hodaie. She did not want to perform any procedure, saying I do not have Trigeminal Neuralgia. I tried to ask about what was (at the time) called “type 2” or “atypical” trigeminal neuralgia but she basically whisked me out the door immediately. Seven years later, I’m still in agony.

I am contemplating a SPG block at the moment.

Yes-it is a nightmare in Toronto.Trying to get into the facial pain clinic at Toronto Western I was told to do a TAPMI form.After doing it-and my poor doctor doing it they DELINED me.They say I have tried everything.No blocks .
I am now trying a chiropractor in Akax area who co-wrote a paper on trgeminal neuropathy,If you PM me I will give you details.First treatment was great-second not so great and then we are are going away-so I am going to wait until I get back to start over.prices are very reasonable.
It was just devastating to not even get into the doors of a pain clinic that can Help people with facial pain.I feel for you .In the same boat with lots of leaks

@Bandalar : I have had a few SPG nerve blocks. They sound scarier than they are. I did not find long-lasting relief, but hopefully you will.